A very healthy 40 year old college professor develops a headache and collapses at home. CAT reveals a large but localized intracranial bleed that turns out to be bleeding into a large Glioblastoma. The patient is intubated, unresponsive but postures to pain. No operative intervention. Neurosurgical opinion is patient will not get better but will not progress to brain death.

Family is VERY reasonable and accommodating. They say they understand the situation and accept it. The family VERY much wants to donate organs. The patient will not pass a brain death protocol. Nor is he a candidate for Non-Heart Beating Donation (Donation after Cardiac Death). His heart and lungs are strong and he ventilates normally on a T-Tube.

As it happens, there is a blood relative of the patient awaiting a kidney for chronic renal failure in another State. The family desires a Directed Living Related Kidney donor gift from the patient to the relative. So the plan was to take the patient to the OR, take the kidney as a normal donor might, close the operative wound normally, recover the patient normally from anesthesia, bring him back to the ICU and then withdraw care according to the wishes of the surrogate. But there’s a problem. The related recipient was tested in the usual fashion and doesn’t match. Something about having had children in the past and now is not a candidate for this kidney and is back on the list.

So……the family now desires a kidney to be taken from the patient in the same manner and given to anyone on the current list who will match. The wife says the patient would want to give his organs but the current rules of the game prohibit it, so what’s the problem with end-running the rules by simply making it a consent issue? He would want to give the kidney, the wife wants him to give the kidney and the relative can use the kidney. The “rules” only get in the way.

Is this ethically acceptable?

For the case I presented, I think there is a big difference in a terminally ill but not brain dead patient donating a Living Related Donor kidney and donating a kidney to the top of the anonymous list. It could (and has been) considered an intentional end-run of the “rules”. It is not done here at UPMC, BTW.

There are rules governing the donation of organs. The reason for those rules are to avoid the plot of the 70s movie Coma by Robin Cook and selling organs on EBAY. Anyone with an interest in how the rules go, look up the 1981 Uniform Determination of Death Act, Burke and Hare scandal, the “Dead Donor” rule. These rules say that brain death equals death and once death has occurred, organs, if they are viable because they have been supported, can be procured. If the brain is not dead, they can’t. I am hoping Leslie gives us her expertise on this matter but here are my thoughts, FWIW.

I can donate a kidney to anyone I want anytime I want but normally there has to be some reason I would want to do that. I can give it to my daughter if she needs one because it’s a good thing and the right thing to do. Maybe even my lifelong best friend if he matches. It passes the test of “reasonableness”. However, it isn’t as reasonable that I give a kidney to someone I don’t know and isn’t directly linked to me in some fashion. That would be a nice gesture if I really wanted to help my fellow man, but I wouldn’t do it and not many others would do it either. It doesn’t pass the test of reasonableness.

Dick mentions “bloody nearly dead”. That raises the subject of bending the rules. A patient that does NOT pass the criteria for brain death is excluded from donorship even if he or the family wants it. It is not a consent issue. It is a rules issue. Greater good. Avoiding potential damage to society by limiting the autonomy of a few. Them’s the rules. But, in order to create a bigger pool of organs, the rules have been bent just a little by Donation after Cardiac Death (DCD), formerly called Non Heart Beating Donation. In this scheme, cardiac death is substituted for brain death in patients that are “bloody nearly” brain dead. In DCD, the brain may very well continue to be alive when the patient is pronounced dead by cardiac criteria. The heart is irrelevant. It only informs as to the status of the brain, and the rules are clear. But in current dogma death is defined by the status of the brain. Donation after Cardiac Death is very, VERY controversial and a groundswell is building against it. But, for now, it’s legal and done in some hospitals. It is NOT out of the question that it may be stopped someday unless the rules change.

But that’s another argument. For the present argument, I personally (FWIW) think that a non-brain dead potential donor can (through pre-existing declaration of wishes or through surrogate) “decide” to donate an isolated kidney to a relative because it passes the test of reasonableness. If there is evidence he would do that anyway even if he was alive and healthy, it’s reasonable to assume he would do it if he had the opportunity but was incompetent to consent. So he might be taken to the operating room, the kidney removed as it would be in anyone else, the patient recovered in the Post Anesthesia Recovery Room and sent back to the ICU in the same condition he left, then life support withdrawn.

However, doing that exact scenario to give a kidney to an anonymous recipient on the transplant list is not quite the same thing. THAT scenario is EXACTLY as what might transpire had the patient been brain dead. It is not “reasonable” that the patient would, in life, give a kidney up to someone he doesn’t know so it isn’t reasonable in near-death. It VERY strongly smacks of end-running the rules just to get the organs, which is exactly why the rules were enacted.

SO, my advice is to adhere to the rules because the rules are beneficial and prevent abuse that would most certainly happen. If we want to increase the pool of organ donors, go to the public and make a case for expanding the pool by expanding the definition of eligibility. If a patient isn’t quite dead but “dead enough”, then they qualify. See if the public buys that. Until then, the rules should prevail to the letter.